i agree with last poster. i would not want extensive medical stuff done. I would probably go the lesser route to let them live life pain free as much as possible. and I would want to be with that child as much as possible vs work more. working more for $ to see them so little doesnt make sense to me.

im also that girl that thinks that babies who are not doing well in nicu, should be let to go home to die vs stay in hospital for months & not left on machines and needles for their final days.

__________________unassisted, homebirthin mom Had I not birthed children into the world and become a mother... I would not know true love, laughter or insanity.

My daughter who we are adopting has cystic fibrosis. The life expectancy is much better with recent breakthroughs, but average is still about 38 years. Our situation is different because we adopted her knowing her condition and prognosis. Thankfully, her specific mutations result in a milder than normal disease, so her prognosis is for a full happy life.

We do everything we can medically to ensure her health. She takes 3 hours worth of breathing treatments daily just for maintenance, more if she's sick. She also requires roughly twice the amount of calories as an average child her age, so we have to be very good a out meal planning and offering snacks to help her meet her caloric goals. She needs to take enzymes with all food, so everywhere we go I have to pack food, Pediasure, and enzymes. We do not skip treatments EVER even though her docs say its ok every now and then. We do everything we can medically to ensure her health. If there was a new treatment not covered by her Medicaid, we would find a way to pay for it.

Since we are adopting through the foster system, her in-state college tuition is waived, but we are saving anyway in case she wants to go out of state or to cover books and dorm. I am dreading paying for this little diva's wedding

We are taking her education very seriously and enrolling her in speech therapy. I am keeping her out of the public school PPCD class even though she qualifies for it, because her treatments are so time consuming I don't see how we can fit in naps, meals and snacks, family time and school. I am starting a homeschool program with her, and if that goes well I will continue homeschooling at least until she outgrows the need for a nap. At that time we will reevaluate.

Just wanted to share our thought processes on this. We assume she will lead a full life and plan just as we would for an average child. Even if her prognosis was not as good as it is, I would do the same and allow her to be a normal kid as much as medically possible.

CF runs in my family. I have several cousins who have CF kids. You can definitely tell the difference between the ones who were given proper medical care as a kid and the ones who weren't. One of the kids plays sports..football and so on. His sister is a cheerleader and does gymnastics. The other cousin has a son who does BMX racing. The one who wasn't given proper medical care when he was younger, isn't in the greatest of health now as a teenager (my cousin actually lost custody to my aunt because of medical neglect of him) and he spends more time in & out of the hospital than the other ones.

Treatments and so on get easier as they get older. I remember as babies we would have to *beat* on them after treatments. Within the last few years they all got vests and that seems a lot easier on them (plus they're all proud they can do treatments themselves).

Thanks everyone for the kind words and all of the opinions and thoughts, I really do appreciate everyone's point of view on this and it's helpful to just hear what others think.

Now that we have had a couple weeks to absorb the news, and I'm able to sleep again, we are able to plan a little more ahead and start thinking about treatment options and looking for specialists. This isn't what we had expected, or planned, but nothing ever is.

Of course I would do everything I could medically to make their life better and healthier. Twenty to thirty years is a long time and I would want them to have everything they need regardless of how long they live. And I would do these things for a child who will make it two years,every life is precious and there are no guarantees on how long anyone will live.

This. Plus, sometimes these estimates are way off. My aunt was born with a birth defect, they said she wouldn't make it past six months. When she made it to six months they said a year. Then they said the most she would make it was five years, then early adolescence. Through the power of prayer, she is now fifty one year's old. Praise God. Can you imagine what her life would be like if they had chosen to do nothing because they thought she would only live a few months?